More Detailed Update

When Rob said that James is not doing any better then yesterday (Friday) he did not explain really what that meant. Friday evening after the procedure James woke up from a short nap and started a “coughing fit” because he couldn’t breath. Although he did not present the normal sign/sound they are looking for when your airway is restricted they proceeded to give him a dose of Epinephrine via mask and a dose of Dexamethasone via IV. Since both were given at the same time it’s hard to say which one did the trick. James absolutely hates to have a mask put on his face and goes somewhat beserk when he sees one coming. Rob had to put some effort into restraining his hands while I held the mask in place. It took a bit for him to just calm down from the whole mask procedure, so by that time we don’t know if the Dexamethasone had kicked in or the mask treatment had done the trick. Regardless he did better the rest of the night, just having a few smaller coughing fits. He did not sleep well and could be heard saying “no mask, no mask” as he rolled around in his sleep.

Yesterday he was definitely under the weather, fighting a fever and have occasional coughing fits again. He would get to the point where they would call the doctors in and then by time the doctor actually arrived each time he had settled down enough to wait it out. At one point we did try a new mask treatment called Atrovent, but it had no effect whatsoever. This time I gave it through his mouthpiece and told him it was treatment time. He wasn’t all too happy about this but did cooperate and we did get it in him. Blood work yesterday showed his white cell count to be fine, so there is no indication of an infection. It also showed his potassium levels low and borderline of greater concern (and from what I understand if these levels are low it causes troubles with your heart). So they readjusted his IV. He also was not able to get much of his feed in so they had to readjust his IV again to make sure he wasn’t going to run into any problems metabolically.

Last night we had to turn his O2 up to 1L and even on that he is only SATing 93/94%. This is discouraging as yesterday he was on 0.5L all day and throughout his coughing fits and/or rough breathing he was still able to hold good SATs most of the time.

He continues to have fevers. Also his belly has been hard and distended. We’re trying a new venting system called a Farrell Valve which is set up with his feeding bag and suppose to relieve pressure during feeding. So far I can’t see any real results from it and I’m still venting him myself throughout the day. We’ve also been leaving his G-tube open during the middle of the night after his system has absorbed his feed and we’re getting chunks of phlegm out of his system that way. We’re not sure how much this phlegm is affecting his gut and how he feels overall. Even though we’ve been faithfully venting and using this pressure relief system he still passes some pretty strong gas. They sent away for a retest of his c. diff yesterday, as that also can cause excessive gas. We should get the results today or tomorrow.

The doctors had hoped he would look better today. It is not uncommon to have fevers for the first 24 hours after an anaesthetic, but he is past that stage now and they have to start wondering if something else is going on. The famous suggestion: he picked up a virus. So today they’ll do a nose swab for viruses. They’ll be giving him a shot of potassium and then later today checking his blood again. They want him to be feeling better before they do a CT Scan, so they’ll put in a request for one but likely it won’t be tomorrow unless he makes some major changes today. At the same time it’s highly unlike he’ll go home tomorrow unless there is major improvement and stability by the end of today. Tuesday will be the earliest and even that is somewhat questionable. *sigh*